Trial Date

Yesterday was my big day at the hospital. Usually I make this trip alone, but today my husband is accompanying me as he has business in town. My labs are scheduled for 9:30 a.m., but a 6:15 am departure is necessary as it is impossible to avoid rush hour traffic at this time of day. As David is driving, I am able to sleep on the way in–always a treat.
Traffic is not too bad today, and we arrive at the hospital a little before nine. I say goodbye to David and head upstairs to the infusion wing to check in. After presenting my blue MGH card my plastic ID band, or my “jewelry”, is placed on my wrist. Sometimes it is obvious who is here for treatment, other times that fact is given away only by the plastic wristband.
There is a cart of donated novels in the waiting room and I replace the book I had borrowed and scan for any new titles that look intriguing. Infusion runs on schedule, and after a few minutes I am called. I am asked to verify my name and DOB and they check my wristband. I am then led to a little cubicle where I remove my shoes and am weighed. My blood pressure, heart rate, blood oxygen ratio and temperature are all measured. I am asked if I am in pain or fatigued. The fatigued part amuses me, as I have invariably risen at an ungodly hour to get here. I am tired, but this question refers to a different sort of fatigue; that which is brought about by cancer and it’s treatment, and so I answer no. A call is made to figure out which room is available for me, two (yea!) blankets from the warming oven are fetched, and I am led down to the part of infusion reserved for patients enrolled in clinical trials. I am put in my own room with a bed, shared bathroom, television and dvd player.
Now the fun starts (really). First is the meet and greet–as various members of my clinical trial team appear. First is Sarah, who always has a hug and a smile ready. I need to give her a urine sample, and then she does a blood draw. The technical term for all of this is PK’s, or pharmacokinetics. The purpose of this phase I clinical trial is to understand what the trial drug does to a body, and that is in short, the definition of PK’s. Another applicable acronym is LADME, which stands for Liberation, Absorption, Distribution, Metabolism and Excretion, which is basically the pathway of the drug through the body.
In the first months of the trial, the blood/plasma sampling schedule involved several draws, and an IV would be inserted (more jewelry). Now Sarah is able to do it all in one shot. She, by the way, is an expert on the insertion of needles. If she were to meet you, within a few moments she would have visually assessed where your best vein was. No joke. This is my kind of nurse. When you get stuck as often as I do, you want it to be right the first time.
Several vials of blood are taken, as I am actually enrolled in two clinical trials. The second trial is for a technique developed at MGH that searches for very low concentrations of circulating cancer cells in the blood of patients.
Nastasha then comes in and collects my trial diary (I record the times of my morning and evening doses each day, as well as the time of the meal prior to the dose) as well as the containers for my pills. It is a good sign if they are empty, as it means no doses were missed. Nastahsa herself is going missing from my life soon, as she is going back to school to become a nurse practitioner. I am sad, but happy for her and we have pledged to stay in touch. It is amazing how close you become to the people who are in the business of saving your life.
Jose, who will be my new Nastasha, is not actually part of my team yet, but always comes in for hellos and hugs as well.
My oncologist, Dr. Alice Shaw, is early today as she has another commitment. First we go over the results of my scan. It is a good report–everything is stable. There are several little nodules in my lungs and one in particular that we are watching. It is unclear if they represent recurrent cancer or scarring, but the fact that they remain stable is reassuring. Alice then listens to my lungs, checks my ankles for swelling and answers any questions I have. I am one of those patients who is comfortable with more rather than less information, and she is very indulgent in this regard.
After Alice has left, I am visited by volunteers in pink jackets who offer me tea and toast–I take the tea. Soon Irene, one of my favorite people on the planet, appears. Irene is one the perks of my enrollment in this trial. She is part of the HOPES (Helping Our Patients and Families Through Education and Support) program at the hospital, and offers complimentary acupuncture to patients in infusion. I LOVE this part of my visit. She inquires as to what issues I would like to have addressed (stress, nausea, fatigue, pain) and I ask for the garden variety treatment. This involves three acupuncture needles in each ear, which she leaves in for 20 minutes. Invariably, I immediately feel more relaxed. Soon Marguerite comes in. If you were lost at sea (as I was when I started coming here), you would want Marguerite there. She is capable, wise, and kind. Her years as a nurse have done nothing to dull her sense of caring–she really does care deeply about her patients and inspires confidence. She has helped me address my fears on all different levels.
Now it is time for my dose. I am presented with a new diary and two pill bottles. Sarah has written the mg on the side in sharpie marker. The drug has no name yet, just a number, and Sarah reads this out to me each time, as well as confirming my name and birthday. I am given the tablets and some water and Nastasha notes the time of my dose. This concludes the official end of my trial day, although I linger a while longer just to chat.
My next stop is to see Mary Susan Convery, who is the thoracic social worker. When I was restaged last summer, I quickly fell into a depression. I did not want my mental health to interfere with my physical health (they are so intrinsically linked) and my oncologist referred me to a psychiatrist. He prescribed an antidepressant (which I had taken before, but had been off of for 6 months) and also suggested that I talk to Mary Susan. I did not know that this was part of the role of a social worker. Mary Susan is both a resource as well as a counselor, and as her specialty is thoracic oncology, she is well acquainted with the issues I was struggling with. I have been seeing her for almost a year now, and I consider our visits a critical component of my sense of well being.
When my appointment has concluded, I have just enough time to go to lunch before I must head over to Massachusetts Eye and Ear Infirmary for a checkup with an opthamologist. One apparent side effect of the drug has been a visual disturbance where I see light trails or ghostly shadows of objects in dim light. It is confirmed that my eyes are in good health, but that my problem is neurological in origin. It is called Palinopsia and it is a symptom rather than a pathology or disease. It is not known if it is permanent or transient, but for me it is merely troublesome and I am simply relieved that there is nothing to indicate that that the health of my eyes is at risk.
It has been a long day. My husband is waiting outside for me and we retrieve our car to begin the long drive home. I am relieved that everything was stable on my scan. I can leave for our summer vacation with a sense of well being.

8 responses to “Trial Date”

Linnea: It was incredible to read your blog; it puts the African adage of “It takes a village to raise a child” to a whole new level of taking a village to get people through a cancer trial! Reading this gave me a ‘visual’ of what your day of treatment is like. How ‘fortunate’ you are (is that a strange word to use?) to have, not only professional and knowledgeable people caring for you, but also those with so much compassion. It indeed does make a difference, doesn’t it? To feel that you are in capable hands, and that there is also an aura of kindness and love surrounding you….what a blessing!
Now go and vacation!! I hear from Bill Moulton that you have suggested a ‘barn party’ at his place for when we come! What fun that would be! We vote ‘yes’ for that!
be well, friend…and love to David and Peter….and to you, of course! Pat

Linnea–
This is wonderful! I am so very, very proud of you! Thank you for sharing your journey. It’s beautifully written, and as predicted, wonderfully visual! This is definitely going to help us stay connected with your trials and triumphs– and I know this will be a help to so many walking similar paths. You are my hero!!! Love you much! M (And PS…. Love the picture!)

So glad to finally “meet” the wonderful Linnea that my sister-in-law, Melinda, has been talking about for years. No wonder she loves you! Thank you for sharing your brave and moving story and being willing to educate us on the journey.

Linnea-
Keep up the good work with your new blog!! It is so uplifting to read!!! You are not only an inspiration to others out there looking for some hope, but you are an inspiration to all of us at the hospital…. you truly are a hero!! Enjoy your time “away” from us. See you soon
-Sarah

Thank you Melinda (my oldest friend), Stephanie (who I hope I get to meet–I’ve heard so much about you as well) and Sarah–who I’d be in a real pickle without. I so appreciate the support and interest.
Linnea

I like your blog and you a lot. Very positive and encouraging. I would like to continue reading it for many years, my parents lived to 90. I just turned 71, things in common 4 years with NSCLC. lobe removed, chemo, radiation, chemo again and now good and easy 3rd cycle of Alimta. Like you my doctor failed, arm hurts over pillow sleeping face down? is muscular pain, problem eating can’t pass food, center chest pain? take pills for stomach reflux, knee pain? take pills for arthritis… all symptoms of lung cancer that we found years latter cough, blood spit and 3.5 cm tumour after a wedding in England where too many people smoke in public places. I hugged the bride without knowing that we had growing tumours, her just found is the size of a lemon in her brain, she is half my age with 2 young kids. Ex catholic, atheist now. Carpe diem

Guillermo–please keep reading! And I do hope we will both be here for many more years. It is highly encouraging that we’ve both got 4 under our belts. We have a lot in common–please stay in touch. Linnea